Loretta Jackson (center) plays a card game with her daughters Onasha Mitchell and Johkida Jackson on a Friday evening at home.

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Originally published on July 7, 2014 10:00 am

Four generations live under one roof in the Jackson household in Sacramento, Calif. — 46-year-old Loretta and her husband, her daughters and granddaughter, her sister and her 71-year-old father. There are a lot of breakfasts to prepare, and Loretta usually starts the laundry and other chores at about 6 in the morning.

Part of her daily routine is working with Shirlene, Loretta's 51-year-old sister, who suffered a stroke in 2000 that left her partially paralyzed and unable to speak.

"She couldn't say nothing,"Loretta says. "Nothing at all."

The doctors and therapists didn't give Shirlene very good odds for recovery.

"They said, 'Well, we've pretty much done all we can do. It's not going to come back,' " says Loretta.

That didn't stop her from trying to help her sister heal.

Loretta and Shirlene grew up in Hope, Ark., in a family of six siblings. Loretta felt "stuck" in Arkansas, and moved to California in the 1990s. But she went back for Shirlene after the aneurysm, and brought her into her home, even leaving her job to care for her sister full time. She and her husband, Milton, built a new bedroom and bathroom onto the back of their home, where Shirlene now spends much of her day.

Every morning, after breakfast, with the morning game shows running on her TV, Loretta and Shirlene work on a daily routine of physical and speech therapy. Shirlene practices writing (left-handed now) and pronouncing several useful words — like "apple" and "buttons" — that she keeps nearby on a paper list.

Loretta massages and stretches Shirlene's legs to improve her circulation. She flexes and rubs her hands and arms, particularly the right hand, which when left alone will twist itself into a knot.

And slowly but steadily, as Loretta improvised these therapies with her sister, Shirlene's ability to move came back. She has learned to stand and move around slowly with a cane. She can now tie her shoes, and even sew with her left hand and teeth. She can also write a little, and has regained a bit more of her ability to speak.

Loretta Jackson also provides around-the-clock care to her father, Theodis Turner, who came to live with the family five years ago, after he was diagnosed with dementia. His symptoms can make him erratic at times, and even routine things, like bath time, can become a struggle.

"You have those days where he'll say, 'OK, I'm in the tub!' and he'll get in fully dressed," Lorretta says. "And if he gets in fully dressed you've got to try to get his clothes off. He won't get out of the tub."

Geoff Hoffman, with the UCLA Fielding School of Public Health, says Loretta Jackson's experience is emblematic of the struggles of the "sandwich generation" of caregivers — people who are squeezed between balancing the needs and demands of aging parents and their own children or, in Loretta's case, a disabled sister.

"The experience for these caregivers is quite burdensome, emotionally and physically," Hoffman says.

The work these family caregivers are doing would be enormously expensive if their loved ones were instead in nursing homes or other institutions, Hoffman says. But the caregivers also often find they must cut their hours at work or, as in Loretta's case, give up outside jobs in order to care for their relatives.

"In effect," Hoffman says, "we are taking care of the most vulnerable in our society — aging adults who have chronic care needs — by placing the burden on the backs of some of the people who can least afford to do ... those who are themselves economically fragile and vulnerable."

In California, Loretta's dad and sister get assistance from the state, which allows them to pay Loretta about $11 an hour to work as their caregiver. But the state Legislature is considering changes to the program that could limit her hours and reduce that income.

The burden is not just financial. Loretta Jackson says the daily grind of running a household and providing care to her sister and dad can sometimes take its toll on her health too.

"Some days I sit down and I can't move," Loretta says. "It's like my body just will go into a spasm. Then I go to the doctor and she will say, 'Well, we can't find anything. You're OK, maybe you were just over-tired or over-exhausted.' Maybe so, but I couldn't move. I couldn't do anything."

Loretta also worries about how her family would get by if anything happened to her.

"I am their backbone," she says. "If I go down, and I can't provide for them, and I don't have anyone that can step in, they probably would go down as well. Or have to be placed [in a nursing home or other facility]. And I'm praying that never has to happen.

Loretta and Shirlene likely have many years ahead of them — together. It won't be easy, but what keeps Loretta going is her belief that one day Shirlene will be able to more easily walk and talk again.

You can hear and read much more about the struggles Loretta Jackson and other family caregivers face, in KXJZ Capital Public Radio's documentary seriesWho Cares.

This weekend, NPR is taking a look at long-term care giving - caring for a loved one who is sick or disabled can mean a juggle between being a parent, spouse, nurse and breadwinner all at once. Loretta Jackson balances her role as mother with her job as caregiver for her paralyzed sister and her aging father. A California program that helps ease the burden on family caregivers is facing potential budget cuts. Cosmo Garvin with Capital Public Radio has this report from Sacramento.

COSMO GARVIN, BYLINE: The day starts early for Loretta Jackson and her sister Shirlene with a bowl of cereal and a prayer.

LORETTA JACKSON: Heavenly father almighty, we pray that you bless this day and continue to heal her body - amen.

SHIRLENE JACKSON: I love you.

L. JACKSON: I love you, too.

GARVIN: There are four generations living under one roof in the Jackson household - Loretta and her husband, her daughters and granddaughter, her sister and her 71-year-old father. There are a lot of breakfasts to prepare, and Loretta usually starts the laundry and other chores at about six in the morning. Part of her daily routine is working with her sister, who in 1999, suffered a stroke that left her partially paralyzed and unable to speak.

L. JACKSON: She couldn't say nothing - nothing at all. The only thing she could do was - hm, hm - shake her head and go hm.

GARVIN: Loretta says the doctors and give her sister much of a chance of recovery, but over time as Loretta improvised therapies with her sister, Shirlene has learned to stand and move around slowly with a cane. She's also regained some of her ability to speak thanks to daily practice sessions.

L. JACKSON: I know you know this one 'cause that's what you love to eat.

S. JACKSON: Peanut butter - peanut butter.

L. JACKSON: Peanut butter - OK.

GARVIN: Loretta also provides around-the-clock care to her father, Theodis Turner, who came to live with the family three years ago after he was diagnosed with dementia. His symptoms can make him erratic at times, and even routine things like bathing can become a struggle.

L. JACKSON: Good morning - you up. We got to get your bath.

You have those days where he'll say, OK, I'm in the tub, and he'll get in fully dressed. And if he gets in fully dressed, you got to try to get his clothe off. He won't get out the tub.

GEOFF HOFFMAN: The experience for these caregivers is quite burdensome emotionally and physically.

GARVIN: Geoff Hoffman with the UCLA Fielding School of Public Health says Loretta Jackson represents the sandwich generation of caregivers.

HOFFMAN: The sandwich generation are these individuals who are sort of facing the challenge of balancing needs of their own children with the demands and needs of their aging parents.

GARVIN: Hoffman points out that Loretta's situation is more unusual because she has the added responsibility of caring for a sibling. He says these caregivers are doing work that would be enormously expensive if their loved ones were placed in institutions. At the same time, they often have to cut their hours at work or give up outside jobs in order to care for their relatives.

HOFFMAN: In effect, we're taking care of the most vulnerable in our society - aging older adults who have chronic care needs - by placing the burden on the backs of some of the people who can least afford to do so in our society - those who are themselves economically fragile and vulnerable.

GARVIN: The burden is not just financial. Loretta Jackson does the daily grind of running a household and providing care to her sister and dad can sometimes take its toll on her health, too.

L. JACKSON: Some days, I sit down and I can't move. It's like my body - this - I'll go into, like, a spasm. But then, when I go to the doctor, she says, well, we can't find anything. You're OK. Maybe you was just over-tired or over-exhausted. I said, maybe so, but I couldn't move. I couldn't do anything.

GARVIN: In California, Lorreta's dad and sister get assistance through a state program, which allows them to pay Loretta about $11 an hour to work as their caregiver. But the legislature is considering changes to the program that could limit her hours and reduce her income. Loretta also worries about how her family would get by if anything happened to her.

L. JACKSON: I'm their backbone. If I go down, and I'm not able to provide for them - if I don't have anyone that can step in, then they probably would go down, as well, or have to be placed, and I'm praying that that never has to happen.

GARVIN: Loretta is 46. Her sister Shirlene is 51. They likely have many years ahead of them together. It won't be easy, but what keeps Loretta going is her belief that one day Shirlene will be able to walk and talk again. For NPR News, I'm Cosmo Garvin in Sacramento.

KEITH: This story is part of the Capital Public Radio documentary series, "The View From Here." This afternoon on All Things Considered, our look at long-term care giving continues with a story of parents caring for their severely disabled child. You're listening to WEEKEND EDITION from NPR News. Transcript provided by NPR, Copyright NPR.